"Some of the most honest and innovative storytelling comes from having creative restraints"

Writer & filmmaker Celestine Fraser on how disability influences her creative projects, resources for disabled creatives, and media recommendations. Plus, an opportunity!

Hello, everyone!

Thanks as always for writing in with your thoughts about StoryLab! It’s so validating to hear from you!

I’ve been learning a lot from the interesting conversations at our mentorship sessions. It’s exciting to see the participants’ stories grow from ideas to pitches to story drafts. More updates soon!

[Reframing Disability Logo ID: On a bright purple background, two white hand illustrations form an open rectangular frame. Inside the frame, the words ‘Reframing Disability’ are written in white text, symbolising a fresh perspective on disability.]

I’ll dive straight into the interview with Celestine Fraser, a writer, copywriter and filmmaker based in the United Kingdom. She is the founder of Just Copy, a media company communicating disability. Celestine’s work has been programmed on the BBC, screened at the BFI and Barbican, and published in VICE, Metro and Little White Lies. In 2023, she was named the UK’s most influential disabled person in media and publishing by the Shaw Trust’s Disability Power 100. Most recently, she has started a Substack: Body Babble, a newsletter where crip, queer and misfit bodies talk back.

I met Celestine online last year when she reached out on LinkedIn with her sweet message:

“Thank you for doing what you do. I always look forward to Reframing Disability popping up in my inbox.”

That’s the magic of Reframing Disability – it has connected me with wonderful people across the world. I found Celestine’s brilliant films, Better, and Ill, Actually that introduced me to her work on disability.

Better explores sibling relationships and ableism within the context of disabled identity, while Ill, Actually, explores the challenges of being young and chronically ill in a carefully curated online culture. I’ve been eager to feature her in the newsletter ever since to introduce you all to her.

Celestine talks to Reframing Disability about her creative process.

“I’m always trying to think about how a story, character, or even a line might land on someone who’s not me”

Priti: How does your disability influence the stories you choose to tell and the way you tell them?

Celestine: My disability influences everything, really. I have several chronic illnesses and I’ve been through good and bad periods with them, and I experienced completely different barriers each time. For that reason, it feels a bit like I’ve had a spectrum of different experiences of disability. For several years, I wasn’t able to leave the house. Also, around a similar time, I used a wheelchair because for many years I really struggled to walk. But now I’m able to walk again, and these days I consider myself to have a non-visible disability.

Because of the nature of my work, I have a lot of disabled friends. So, their real life experiences, [along with my own], influence and inspire the stories I choose to tell.

Being open about my own experiences helps contributors feel more comfortable about opening up to me about their own lives. People relax knowing that I’m on their side and won’t approach things from a very ‘medical model’ or ‘outsider gaze’.

I think that I simply wouldn’t have been able to make the films or write any of the articles if I was non-disabled because no one would have trusted or funded me, and I probably wouldn’t have had that passion in the first place.

Priti: What inspired you to make Ill, Actually?

Celestine: I made it for slightly selfish reasons! In my early 20s, I wanted my friends and family to understand what I’d been going through since my late teens in terms of illness and disability.

What I had struggled the most with acquiring a disability at a pretty young age was that talking about my disability seemed to make people around me very uncomfortable.

Looking back, I don’t blame my friends. We were all very young and most people hadn’t yet had that first-hand experience of disability. But it did feel very lonely. I spent a lot of time watching films when I was ill and at home. I guess I wanted those films to mirror back my own life to me, but I just couldn’t find anything out there that felt authentic and kind of cool. So, I realised I was going to have to make that film if I wanted to see it. That was how the idea of Ill, Actually came about.

Priti: For Ill, Actually, you spoke to over 100 people. What were your takeaways about the tension between connection and community, and the isolation young disabled social media influencers have?

Celestine: It was a big honour to have these strangers opening up to me on the phone telling me these intimate details about their lives. I think that was only possible because I was also able to share my own lived experience of illness and disability so people felt safe enough to share their own. What struck me most was people’s isolation. Lots of people told me they appreciated having this phone call because they hadn’t had the chance to have these conversations with the people around them. That was quite moving, but also a bit shocking, because we all so need to be having these conversations.

I was also struck by all the creative ways that people had found to soothe that ache and that longing for connection that they had inside them. For many, the internet and social media had been their lifeline and the way they felt connected to the wider world.

Our contributors, Jameisha, Ben and Bella had found their own way of accessing community despite the barriers around them.

Priti: In Better, I was struck by the contrast between the older sister who sees the wheelchair as a sign of decline and the younger sister who uses it as a tool for independence. What drew you to explore that difference in perspective?

Celestine: My director, Zoe Hunter Gordon and I wanted to explore the idea of ableism on screen. We wondered how we could make this concept, which often feels intangible, easier for people to understand.

We were interested in seeing ableism play out in relationships, in this case, between two sisters. We were telling the story of Kitty who’s disabled and recently started to use a wheelchair. She’s got a new boyfriend, a great bunch of friends, and learnt to live life alongside her chronic illness. Her older sister Ruth, still sees disability through a very medical lens. She’s very anxious about Kitty and thinks she needs to focus more on her health and to keep trying to “get better”. She particularly is uncomfortable with the wheelchair because she’s absorbed a lot of what doctors have said about Kitty deconditioning if she starts to use it.

We didn’t want the film to feel didactic or preachy and decided not to use the word ‘ableism’ or even ‘disabled’.

But since film is a visual medium, the wheelchair became this really handy symbol, which represented both Ruth’s ableism and Kitty’s freedom and empowerment.

A lot of people have asked me if I have a sister or friend like Ruth. And thankfully, there hasn’t been anyone and I’m lucky for that.

But a lot of the back and forth between the two sisters felt like my internal dialogue while I struggled with internalised ableism. A lot that Ruth told Kitty, I had said to myself on my bad days.

And then equally, Kitty and her pride and empowerment is something that I’ve gradually come to and been able to absorb.

Priti: In your opinion, how does the media industry approach disability and health? What are the tropes you see that should be avoided? What kind of narratives would you like to see more of?

Celestine: Disability is still very much siloed by the media industry and stories about disability are still so often seen as niche and relevant to just a tiny minority, which is incredibly frustrating.

And when our stories are told, it’s so often through a medical model. More than anything, it’s just very boring.

I hate the fact that disability is seen as separate from all the other parts of our lives, when in reality, it’s completely intertwined with our relationships, with our working lives, with the way that we interact with the physical world and the built environment. It’s woven into our politics, our culture, everything.

I’d like to see more narratives that explore disability culture and subcultures. In the same way that queer culture has become a bit more mainstream in recent years and a lot of people have an awareness of what queer culture might look like, I’d love to see the same thing happen for disability culture.

Priti: Are there any particular practices you follow to ensure that your storytelling is accountable to the disability community?

Celestine: One thing I always prioritise is listening to people’s lived experiences, feedback, and criticism. Some of that is through conversations in person or online, but also through reading.

I’m always trying to think about how a story, character or even a line might land on someone who’s not me. This helps me see past my own blind spots and helps me predict how different people might respond to it. For me, the goal, a bit like in medicine, is to first do no harm with my portrayal. A seemingly small creative choice I’ve made might be interpreted as really important when I’m representing a community that has historically been marginalised.

So, having a lot of conversations with your collaborators and also with trusted disabled friends is really important.

To give you an example, we debated whether to name Kitty’s illness in the film and ultimately we decided not to because [we didn’t want to make it] an advocacy film about that condition, but have a more universal resonance.

Priti: What advice would you give to emerging storytellers who want to create authentic inclusive disability narratives?

Celestine: I’d emphasise that the conditions don’t need to be perfect for you to be able to make a piece of work. You can be disabled and make stuff. You might just have to be a bit creative about how you make that happen.

Some of the most honest, interesting, innovative storytelling comes from that place of having restrictions, having creative restraints. The documentary Unrest, about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was directed by Jennifer Brea, mostly from her bed. It’s the conditions that she produced that film in, that really made it what it was.

I produced and was an associate writer on Better almost entirely from my bedroom. I really couldn’t leave the house at that time apart from going to medical appointments.

So, Zoe, my director, would come with printouts of the script, and we’d just read it out loud and test how the different lines landed. [My condition then] did influence some of the lines, such as where Ruth says, “but you’re in a wheelchair Kits,” and Kitty replies, “so I can leave the f***ing house.” That’s very much how I was feeling at that time.

Priti: What are you excited about doing next?

Celestine: Over the past couple of years, I’ve been more focused on writing than film.

So, I’ve just launched Body Babble – a newsletter where crip, queer & misfit bodies talk back.

I’m very excited to have a space where I can finally publish exactly the kind of writing that I want. I don’t need to wait to find an editor or to wait for a gatekeeper to give me permission to start. I have a long list of stories I want to write about disability, health, queerness, identity, how those things interact and what they say about our wider world.

I’m not deliberately avoiding the disabled label, but it is nice to give myself a bit more freedom to write broadly about topics that still relate to the body, mind and the world.

Celestine’s resources for disabled media creatives

• We Crip Film is a film festival in London celebrating disabled joy and culture.

• The Disabled Artists Networking Community (DANC) works with and brings together professional disabled artists and key decision/change makers in the industry to take a solution-focused approach.

• Disability and Journalism Forum, an annual conference in London.

• Disability Debrief and Reframing Disability newsletters.

• FWD-Doc, a global, intersectional community of disabled creators and allies working in media to build a more inclusive, accessible, and equitable entertainment industry.

Watch

Kyla Harris’s BBC TV series, We Might Regret This. “It just exposes disability in a way I’ve never seen on screen before,” Celestine says.

Read

Celestine’s article about her experiences of making media as a disabled person.

Her piece on the Cripple Punk Movement, a perfect blend of how disability culture has a wider significance and how it interacts so closely with the politics of our time.

And her opening piece in her newsletter, Body Babble, on what a Stammering Pride in London taught her.

Hunchback, a novel by the Japanese writer, Saul Ichikawa. “I really enjoyed this short novel about a woman who’s an erotic fiction writer with muscular dystrophy. It’s so rare to read anything authentic about disability, sex and desire, especially fiction, and I thought Ichikawa did it brilliantly,” Celestine says.

The Age of Diagnosis by Suzanne O’Sullivan. “Lately I’ve been interested in where disability begins and ends. What makes some people identify with a medical diagnosis, some with the social or political label of “disabled”, while others refuse to incorporate their illness into their identity in any way? I found this book on diagnosis to be very nuanced and sensitive. In many ways, it argues that disability and mental illness are not exceptional experiences but very universal ones, almost inevitable parts of being alive,” says Celestine.

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Opportunity

The Disability Debrief newsletter wants your stories in under 500 words.

Prompt: “Imagine we’re in 2050, and disability rights are real. What would it be like?

Deadline: 1 November 2025

Payment: £100 for every published entry

Find more information in Letters from the Future.

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Warmly,

Priti